India: approved the National Policy for Treatment of Rare Diseases.

The government of India has finalised and approved the National Policy for Treatment of Rare Diseases. With an affidavit filed in the Delhi high court on Thursday (May 25), the Union health ministry also submitted a copy of this national policy.

Report on eHealth in the WHO European Region

See the report on the WHO website

11 November 2016: inauguration of the NGO Committee for Rare Diseases

The inauguration will be at the United Nations Headquarters in New York.
Watch live stream: Global Gathering for Rare Diseases

EUROPLAN on twitter

Follow us : @EUROPLANproject

Article: State of rare disease management in Southeast Asia

An article published in the Orphanet Journal of Rare Diseases consists of information from six Southeast Asian countries on management of rare diseases based on the World Health Organization’s framework for action in strengthening health systems. See the full article

FDA providing $2 million in new grants for natural history studies in rare diseases

The aim is to collect data on how specific RD progress in individuals over time so that knowledge can inform and support product development and approval. Grant applications will be due Oct. 14, 2016
For further information visit the website

France: 3rd National Plan for Rare Diseases

The Minister of Social Affairs and Health, Marisol Touraine, has announced that a third national plan for rare diseases would soon be launched, continuing from the previous two plans. Read the press release.

Yann Le Cam appointed to Board of the European Medicines Agency

 Read his interview on EURORDIS website

Evaluation of the 2nd French national Plan for Rare Diseases

A mixed report but recommending a 3rd Plan. Read the document.

Guide to information on human medicines evaluated by EMA

This guide describes the different types of information the Agency currently publishes for both centrally and non-centrally authorised medicines, as well as publication times and location on EMA’s website.  It aims to help stakeholders know what kind of information to expect on medicines undergoing evaluations and other regulatory procedures. The same information described in this document is presented in a tabulated format in the Annex.
Whilst reflecting the current practice, the guide is not intended to provide an exhaustive list of EMA publications, and EMA may at its discretion publish additional documents as appropriate. Other nonconfidential documents held by EMA which are not published may be provided to stakeholders upon request.